Reduced to a disease

I am more than my ‘lived experience’ of dementia. Seriously. And I am much more than just a ‘Dementia Advocate’. True. Many years ago, I started advocating for people with dementia who are invited speakers to be listed on the program by more then their disease. Back then, not even the persons name was added.…

Too old for a nursing home…

When my father in law was needing more support than we could get for him to keep him in his own home, we felt we had no choice but to suggest he move into a nursing home. His first response was: “I’m much too young for a nursing home.” He was well over 70 years…

I lost my undies…

In March, when I started this blog I went out to the clothes-line to get in some washing (mostly my underwear), and the line was empty. I went inside and thanked my husband for bringing in the washing, but also felt a little confused, as he would not usually put my clothes away, and I…

Australia will need to say ‘Sorry’ (again!)

As the time to provide a submission to the Royal Commission into Aged Care Quality and Safety draws to a close, I remain deeply concerned nothing will change, in spite of the more than 8000 submissions, millions of dollars spent on the Royal Commission, and any likely outcomes or ‘recommendatons’. Historically, the Australian government chooses to…

R.I.P. my beautiful Boris

‘Stop all the clocks, cut off the telephone’ Stop all the clocks, cut off the telephone, 
Prevent the dog from barking with a juicy bone, 
Silence the pianos and with muffled drum 
Bring out the coffin, let the mourners come. 
Let aeroplanes circle moaning overhead 
Scribbling on the sky the message He Is Dead, 
Put…

Ending confinement and segregation

Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care. This article was published on 25 Jun 2020, in the Australian Journal of Human Rights, by Linda Steele , Kate Swaffer , Ray Carr, Lyn Phillipson & Richard Fleming. Abstract: Human rights are increasingly being considered in Australian law reform…

Human Rights and the Confinement of People Living with Dementia in Care Homes

Journal article by Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming, published 18 June 2020 in Health and Human Rights Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights…

Patch Adams & #BanningBPSD

“If you treat a disease, you win, you lose; if you treat a person, you win, no matter what the outcome.” (Patch Adams) The movie, Patch Adams (which I love), is based on the true story of a heroic man, Hunter “Patch” Adams, determined to become a medical doctor because he enjoys helping people. He…